Tag Archives: Down’s Syndrome

I’ve made it. We’ve made it. We’ve made it to the End of Term, we’ve dragged ourselves out of bed and into work and school before the sun was properly awake and returned home, picked our way through the fairy-lit dark, long after it had gone to bed for what feels like weeks. Everything about us was increasingly reluctant the further we advanced into December and the closer we got to the End Date and finally it is here. The children, exhausted by the effort of an eight-week term, have taken themselves off to bed early.

In a short few weeks, I don’t suppose I should refer to them as children any more, here or anywhere else. Next month, S will be 18, technically a fully-fledged man. L will enter her teens. I will be one year closer to fifty (as will everyone else under fifty, I guess) and I am considerably greyer now than I was this time last year. Time, that constantly stretching, elastic beast, for all the eternal sense of the first night of the holidays, is speeding up.

When people ask me about my children, they no longer comment that I must have my hands full. I guess it must be obvious after all these years, but now, they are far more likely to give the knowing chuckle reserved for Mother of Teens than the rueful smile of Tired with Toddlers.

But here’s the thing. My house isn’t like other houses. My tribe of teens is led by someone different. I’ve noticed it before, when other people’s children came to play, but now I see it strongly reflected in my own. Here, it’s OK to be seventeen and still, somehow, see Father Christmas as a statement of fact, not one of wishful fantasy. It’s fine to want a ‘boy band’ haircut and unselfconsciously take a trip down memory lane with Rosie and Jim. Here, the presence of a big brother with Down’s syndrome allows you to be young, to be who you are, a mixture of heartbreaking innocence and slow awakening, to take your time in growing up.

When I explain that my son has Down’s syndrome to strangers or to new friends, so often the response is, if not sadness, then sympathy. Too often, we are so busy counting the deficits that we neglect to count the blessings.

Happy Christmas.

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I’ve been reflecting recently on our decision to send S to a special school. At the time, it was a no brainer. The moment we walked in and the headteacher said to us, “of course, you do understand that he won’t have his own 1-1 TA,” we knew we had come to the right place. S, of course, preferred the mainstream school next door, where the room he had explored had computers that came up out of the desks. He was, I am sure, convinced that every day there would be a day of games and play, while everyone around him smiled and told him how cute he was (he was, still is, if I may say so myself).

We had been thinking about which school he should attend for some time; when I say ‘breaking my heart over it’ I don’t think it would be an exaggeration. In the world of Down’s syndrome parenting, whether or not your child goes to a specialist school or a mainstream one is a major point of debate. After a diagnosis experience still common to many, I believe, one of sad, solemn faces, apologies and the vague, unspoken inference that the baby you hold in your arms doesn’t measure up, is some sort of alternative, inferior creature, the inclusion of disabled children in mainstream institutions such as schools goes a long way to healing this wound. What would sending our son to a special school say about how we saw him? Would it mean that we were giving up? That he, and we, were failures?

And, like all parents, we worried about who his friends would be. In a mainstream setting, my experience as a teacher rang warning bells. Would he spend his school days swilling around in bottom sets, with all that that entails? Or out in the corridor, present but isolated? Would he be able to spend time with the children he would learn the best habits from – or would he be forever out of their way, removed from them by either the presence of a permanent TA or the effects of setting? If he went down the special school route, what would he be learning from the other children there? Shouldn’t he be with typical kids and learning typical things from them? It was a spiral of indecision and I’m glad that one visit settled the matter. We walked in, had a look around and all our doubts and worries fell away. He would be OK, and that school would do a good job.

I guess the thing that I am stumbling towards is the thing that I, as the mother of a disabled child, forgot, and the thing that people who do not have disabled children often mention (and which I, up until recently, have dismissed out of hand as patronising); that spending time with disabled people, or in this case, disabled children, is good for us, that we learn things, all sorts of things, by doing so.

I had always seen this in terms of the typical population, and underneath my skin-deep agreement there was always the resentment; that my son isn’t here as an object lesson in learning to be patient (or something) for other people. That he isn’t an inspiration lesson and that he exists, just as himself, and that is exactly how it should be.

But.

I forgot something, and I forgot something important.

I forgot that, as much as he could learn from typical people, he could learn from disabled people too. He could learn to accept his own difference, by accepting it in others; he could learn to transcend that strange kind of narcissism that assails a person who has a lot of attention, all fixed on them, you know, the appointments, the meetings, the endless, endless questions about what he wants and how he likes to be helped. He could learn to be the one who helps, and be empowered by doing so. I forgot that all the benefits of being educated with disabled young people were true for him too – a disabled young person. I forgot that it wasn’t one way.

It’s a good thing education’s a long game, or I’d be jiggered, frankly.

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I have to admit to a secret weakness for those short videos that make their way round social media. I like the ones where you see how milk bottles are washed and refilled ( there is something equally mesmerising and taky back to the childhood yearsy about them), where kittens crawl over each other (amusing) and even the occasional feat of derring do (although I don’t like to see people hurting themselves). I’m always happy to share something along that has made me smile, and, occasionally, brought a tear to my eye.

Would I have shared them if they weren’t to do with Down’s syndrome? Maybe, maybe not, I don’t know. For me, these short videos hold an added resonance. I, too, have held my toddler and told him (and the world, or anyone else who happened to be there) that I loved him. I recognise the look in these mothers’ eyes, because my eyes have held the same. I have smiled through a tear, taken in a shaky breath at the sight of two brothers, one so tall, one smaller, older; and I have seen, in the corner of my eye, my own sons.

I know why they move me – but why do they move so many others? Why do they move people who have no close, family connection? I’ve thought about it a lot, on and off, and this is what I think.

I think it’s something to do with the challenge of the unexpected. There they are, big, brawny soldiers, being kind. Here are mothers of disabled children, enjoying their lives, having a giggle, being happy.

Because you see, the stats around Down’s are scary, not heartwarming. The vast majority of women in the UK who find out that they are carrying a baby with Trisomy 21 chose to terminate their pregnancy. The NHS is rolling out more and more accurate, earlier and earlier antenatal screening tests. The existence of these tests are welcomed. It’s scary and it’s sad, because these actions and reactions speak loudly about how Down’s syndrome is held in our society at large. A mistake. An aberration. A burden. Something we are better off without.

And I think that’s why these stories, because they are stories, work, it’s precisely why they are so moving. Because that love, that love that isn’t so much said as soaked through every action caught on screen, expressed between mother and child, adult brothers, and more, men who are, you know, Real Manly Men, is something that is, somehow, a surprise.

It is, I think, the biggest tragedy in all the discussion and thinking and acting around Down’s syndrome; that, somehow, you couldn’t love your disabled child or your disabled brother, that, somehow, the love that exists would be a one way street.

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When I was 17, my mum took me to a prom concert at the Albert Hall. Being from Devon, we made a day of it; she took me to see where she went to college, bought me a t-shirt from some sort of brown paper bag, organically woven, rustic varnished floorboarded shop, you know, the sort that you only find in London (or on Gandy Street in Exeter). I wore it a year later, when I went to college. She’d got us seats, right at the front. I remember watching, fascinated, as the percussionist sweated through the soundtrack from a TV show, gaining a round of applause, all to himself. My uncle, a long standing friend of my dad’s, dashing off to get us drinks in the interval, the race to catch the last train home. A hot summer day that sits in my memory, part of my cultural upbringing.

I’m not quite such a fan of theatre as my parents, it must be said. While my childhood was full of visits to the Northcot, Plymouth Theatre Royal, the Haymarket, my own children are much more schooled in the way of the castle and cathedral, seasoned visitors to museums and Site of Historical Significance. This is not to say that theatre and musical culture isn’t something we deem to be unimportant; just that, for us, it is more difficult.

There’s something about the darkness, the tension, the are they pretending or are they real that turns what should be an enjoyable experience into something that…isn’t. Rather than pleasure, it so easily becomes struggle. An attempt to stay rather than participate. Apart from anything else, taking a family of five to the theatre or to a concert isn’t cheap, and certainly not if you add in the cost of transportation and time. For a long time, it hasn’t been worth it.

But last year there was a change in our circumstances. We moved house and suddenly, the idea of going to London for a show wasn’t quite such a pipe dream. For some reason, I can’t for the life of me think why, I made a discovery. A prom concert, something that was impossible for the likes of me and mine became something real. Relaxed. A lunchtime performance, lights on, a social story, break out spaces and hand dryers turned off. Even a short video to show us where to go and what to do. I spent much of the performance with the sort of lump in your throat and moisture in your eyes that won’t quite let you speak. I can’t have been the only one. The mother who chased her son across the stage; I recognised her quiet sense of determined desperation. The girl the conductor gave his baton to so that she could lead the orchestra from the pit, conducting a piece she knew well and loved, she still has the power to call an unfathomable emotion from the well-spring of my heart.

Without that experience, the rules relaxed, what was happening and what it meant spelled out clearly, in a straightforward, no nonsense way, even down to the musicians, wearing different coloured t-shirts according to which part of the orchestra they belonged, we would never have been able to go again. Because last week, that’s what we did. We gathered up an even larger number of family and off we went, access lines to railway and hall called, special seating arrangements for disabled guests made.

As I sat there quietly, lights dimming, waiting for a fantasy, an imaginative weaving of music and movement, words and song, to start I thought about how much it is assumed that we, the audience, will understand. How much it is assumed that we, with no preparation, no explanation, will be able to do, how we will be able to bring together, from the snippets of our experience, to make an evening at the Albert Hall a success. A children’s performance – and a very good one – a serious introduction to some serious classical music. An important addition to a cultural upbringing. A step on the road towards something with even less support for understanding.

I don’t know though. The one that went before. The bounce. The unpredictability of the audience. The love and joy at sharing their musicianship that came from the orchestra in waves as they swapped places during the Soul Bossa Nova, how we sang along to ‘Happy’ (sung by one of the Strictly singers). There was a real-ness to it, a raw power to the performance of disabled children from a special school who played alongside the professional orchestra. There it was, almost touchable in its intensity; the knowledge that music isn’t simply a matter of ‘the best’, but is an experience that should be shared, and that the sharing goes both ways.

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When I was a little girl I got involved in stuff a lot. I wouldn’t say that I was a joiner-in particularly, but when I look back, and count up the activities I did as a young person, it comes to quite a lot, especially when you consider I grew up in a Devon valley ten miles away from anywhere. For a small village, there was a lot going on, from amateur dramatics (adults and children) to gymnastics. The only fly in the ointment (for me, anyway, other children had differently inclined parents) was that if it didn’t happen in the village, it wasn’t happening for me. Hence, any dreams I had of being an ballerina or ice dance champion were dashed.

I started gymnastics when I was six or seven. As it was not long after the end of my four month hospital stay and I was a bag of bones with a red-raw operation scar that went half way round my back (still does, but it’s not red-raw) my parents were, understandably, somewhat anxious about it. I was put in my sister’s group, and she took care of me (or, as I saw it, bossed me about and made me be her partner – she took her role seriously, I guess), and made sure I didn’t hurt myself or wear myself out. I kept going until I was about 12 or 13, my lack of strength preventing me from being much good, but not from enjoying myself thoroughly, even though I could never manage to land on my feet after a handspring and my walkovers went one way but not the other.

Am-drams were similarly long-standing. One of my earliest memories was a rehearsal in the back room of Mrs Hughes’ house (she had so many children, I was never quite sure who they were or how many). I had somehow found myself in the group that were somehow baddies. I burst into tears and had to be moved, even though they came good and won out in the end. Costumes always seemed to involve nylon tights (yuck) and backstage was a wonderful gloryhole of rooms stacked with trestle tables that must have been born before the war. My favourite role was ‘Punch’, where my friend Kay and I got to hit each other with pipe insulation. The worst was when I had to wear an itchy leotard that was supposed to be my friend Carla’s costume.

The clubs were always filled with the same people (we all had similar parents, apart from Sophie, who gave up gym for dancing). Amy came with me to gym and drama. Kay to drama and Sunday School. My mum used to run the Sunday school with Mrs Hughes (who ran the Junior Players) and Mrs Freshney (who ran the holiday club with Mrs Hughes andmy mum), which meant that I didn’t have much choice in going or not (my dad was the man who Washed the Car on Sunday mornings) (not that I minded, I hasten to point out, I was more than happy to go). She used to make the booklets by spreading the individual pages out all over the sitting room floor. Kay and I used to giggle together, and I remained fascinated by the Chinese-style wallpaper in the vicar’s toilet for years, that and the open cistern, for years.

Actually, now I come to think about it, the reason I got so involved was no doubt directly related to my parents. My dad was on the organising committee of the gym club AND the PTA (until he fell out with the headmaster over the spelling of ‘barbqueue’). Along with a go-getty set of parents who ran the sort of clubs they knew their children would enjoy, they provided for us a range of out of school activities that certainly kept us busy and enriched our lives at the same time. When it came to my turn, and my children started nursery and Sunday School and football and scouts, naturally, I thought that I would do the same.

Except, I didn’t. I volunteered for the committee of this, that and the other, and even went to a few meetings, took my turn with a few teas, but, somehow, I couldn’t keep it up. At first I thought it was the new baby thing. Having three young children saps the energy of the youngest and fittest of mothers, so I thought it might be that. Next, I thought it was the fundraising thing. I have mixed feelings about fund raising (and very firm views on cake sales), or meetings and endless circular discussions. But, somehow, other women with more children than me seemed to manage. Other women who were equally busy, or impatient with group decisions seemed to get along just fine. They ran the committee and baked and sewed, raising large amounts of money for a variety of projects as they went along, cheerfully giving of themselves to the community and I…couldn’t.

It took me a while to figure it out. It took me a while to discover things like ‘mental load’ and capacity and how this is different for everyone and how when there is disability in the family, everything is magnified.

So now, when I see something about inclusive church, or business start-ups for learning disabled people, or personal budgets or anything else that sounds like a great idea if only it happened near to where I live, I smile sadly to myself (or scowl, depending on which side of the smile you happen to be) and sigh and know that what the answer will be to any number of good ideas.

‘Here’s an email address.’

‘Here’s a website.’

‘You make it happen.’

And, like every other time before, I drift away, disappointed. Having a good idea is great and all, but unless you have other people around you who have the capacity to turn your idea into something real, unless you have someone around who can make it happen, that’s all it will ever be. Without capacity, it will only ever be a pipe dream.